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To Chemo or Not to Chemo???? That is the Question

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cduvall1 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cduvall1 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 4:58pm
Hi to all,    I have recently been dx with invasive metaplastic carcinoma: matrix producing, triple negative, had lumpectomy 5/28, tumor 2.2 cm, negative lymph nodes, will see oncologist 6/10 to go over options.  On a prior visit to the oncologist I asked many questions about chemo.  I have spent many hours online searching for answers, most say chemo is recommended for my BC.   At this point I will have the chemo. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote like2canter Quote  Post ReplyReply Direct Link To This Post Posted: Jun 04 2008 at 5:13pm
Hi,

I just listened to the teleconference this morning on triple negative.  Their consensus was similar to what I had been told in the past - that triple negative is more sensitive to chemo - which means it works better on us.  And, that no other targeted treatment is available.  Ours is also more fast-growing and more likely to return within the first five years if it is going to return.  I have also been told that it is more likely to met without going through the lymph system, which is why they still recommend chemo when your lymph nodes are negative.  Because of all that -  I chose to do the chemo, although it was VERY tempting to not do it.  I was even more unconvinced on the benefits of radiation and I ended up doing that, too.  Neither one was as tough as I imagined, although they were tough. 

As I've heard so many others advise, though, your choice will be the right one for you.  For those of us who end up with mets, we don't know which action or lack of action really led to it anyway, or maybe there was nothing that could have prevented it.  There are those who have chemo and still get mets and those who don't.  So, once you make your decision, put on your positive armor and plan for the best.  Do what you can and what you are comfortable with.

God will take care of your heart and soul.  The body is temporary - for everyone. 

Nora
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 2:20pm

cduvall 1,

Welcome to the forum!  Good luck on 6/10 with the oncology appointment. I still get nervous before an onc. appointment. Please let us know how it goes.  Feel free to ask questions here or just vent! It's a wonderful forum, and we want to help and encourage each other. 

I would be interested in knowing your age and how the cancer was detected. Also, you may want to do a separate thread to introduce yourself in the Welcome New Members and more people will respond, as it will better get their attention.
 
God Bless.
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2008 at 2:42pm


 
Nora,
 
Your last two sentences were very touching.  AMEN and Praise God!  The Christian is in a win-win situation!  Clap
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ravenhawk Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 9:07am
I posted in another topic but this one exactly covers my dilemma.  I am younger than average Im told and that is part of the issue.  My tumor was 2mm so the specialist I saw says 10% or less chance of recurrence and doesnt recommend chemo (which would reduce the chance by 2-3%).  My oncologist says you are so young that ups your chances to maybe 15% chance.  Due to the tumors small size they couldnt get a result on the HER2 so I may or may not be triple negative.  The specialist I got my 2nd opinion from says the benefits from chemo arent large enough for him to recommend it unless I test positive for the BRCA1 or 2.  The genetics clinic hasnt even contacted me yet to set up an appointment and they only test once a month.  Ive been told there is a 4-6 week wait time for results.  So if I wait for the test to decide and it comes back positive Im a looking at chemo starting in August or maybe early september.  This part might sound wierd, No one knows how they will respond to chemo but if it hits me hard I would rather have to deal with it now when the kids are out of school, colds and flus are minimal rather than just as school is starting and cold season begins flaring.  I listen to the specialist and take that chance I wont be one of the 10 that have a recurrence or I can do everything in my power to help reduce that chance even if its only by 2%.  I am not sure what to do really and its very frustrating!!!
35yrs,DCIS 3/08,left mastectomy 4/08 with expander placement,invasive ductal carcinoma,2mm, stage 1, grade 2,node neg., er/pr -, her2 ??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 11:41am
Ravenhawk, I'm sorry to say once you step into the c world it is out of our hands for the most part when you are planning your life.  You might work in a few things so don't dispair.  When we get diagnosed we probably had plans or didn't like the season, whatever, the main thing is to get well.
I had my BRCA results in 2 weeks.
 
Good luck to you,
 
 
 
 -
 


Edited by trip2 - Jun 06 2008 at 11:43am
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 12:40pm

Ravenhawk,

I can certainly relate to your dilemma!  I know how frustrating the indecision can be.  I would ask for a computer print-out of your calculated risk of recurrence.  Computer programs are available and the doctor just types in age, size of tumor, hormone status, health status, and several other factors.  Although it is just a statistic, it will help you weigh the risk you are facing.

Now after you know your risk of recurrence, I would want to know what is my risk in taking chemo?  Not all people respond to chemo in the same way.  I would also ask what happens if you were not able to complete the treatments for some unforseen reason?
 
Is there breast cancer in your family?  I was told genetic testing would be a waste of money, since there is no breast cancer in my family.  You should probably ask to speak one-on-one with a geneticist who could advise you.  Most cancer centers have a geneticist on staff.  Insurance companies do not always cover the expense.
 
Because of your young age and small children, I would get feedback from close family and friends.  When you discuss chemo and get advance offers of help, don't refuse their help!  Breast cancer is hard, but you don't have to do it alone!  Friends and family will want to help.
 
Please keep us posted.  I know it is a difficult decision, but you are the only one who can make it.  Pray about it, and God will lead you to make the decision that is right for you!
 
 
God Bless.
 
 
sparrow


Edited by sparrow - Jun 06 2008 at 12:43pm
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 1:04pm
Sparrow,
 
While genetic testing might not have been for you, it is inaccurate to state that just because there is no family history genetic testing is a waste of money.  I am BRCA1+.  I inherited it from my father.  There was NO breast cancer or ovarian cancer on his side of the family.  Why?  They were practically all men and those women in my generation who tested, were negative.  So, if someone is young, hormone negative, even without family history, it IS worth it to test. 
 
It is for that reason that a certified genetics counselor should be consulted, even after a generic oncologist (one who is not an expert on genetic cancers) might say not to test.
 
Cheers,
Caryn
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaStar Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 1:11pm
Hi Sparrow,
I was diagnosed with estrogen positive bc in 05. Had the tumor removed and a 5 day rad treatment using the mammosite technique. Was diagnosed in 07 with trip neg. Same breast. Tumor was close to the chest wall.  No lymp involvement. This time, I went for everything. Had a mastectomy , 4 cycles dense dose A/C, followed by 4 cycles dense dose taxol and 28 treatments of rads. I tolerated the chemo extremely well. Only  had one day out of each cycle where I felt a little tired. My decision was to do everything in my power to be sure I never have to deal with bc again.
Brenda
1st dx July 2005 estrogen +
Lymp w/5 days mammosite therapy, Stage I, no nodes
2dx July 2007 triple neg, skin saving mastectomy. 4 A/C, 4 taxol plus radiation, Stage 2 grade II/III, no nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2008 at 2:00pm

Caryn,

I couldn't agree with you more!  I was just trying to explain what I was told about genetic testing, and this is why I was advising one talk to a geneticist.  Sorry if it sounded something other.  Thanks for clearing this up, in case others misunderstood. 

 
Thanks,
 
 
sparrow
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ravenhawk Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2008 at 4:02am
I was told even though I dont have a strong family history (I have one great aunt) that I could still be BRCA1 or 2 +.  The mutation has to start someplace and I too dont have a lot of women in my family so the gene could be there but just not expressed in anyone else yet.  I have the computer print out and it shows an 18% chance of recurrence but the oncologist I talked to said she thinks its lower than that because my tumor was so small (2mm).  Im still waiting for the genetics clinic to contact me and set up the appointment
35yrs,DCIS 3/08,left mastectomy 4/08 with expander placement,invasive ductal carcinoma,2mm, stage 1, grade 2,node neg., er/pr -, her2 ??
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sparrow Quote  Post ReplyReply Direct Link To This Post Posted: Jun 09 2008 at 9:12am
Hi Ravenhawk,
 
Did the oncologist tell you what percentage chemo would lower your risk?  I'll also like to hear what they advise you on genetic testing.  It might be good to find out if insurance will cover both genetic counseling and genetic testing....not that it would keep you from being tested but just so you would know upfront.  Insurance companies vary so much in what they will cover.   I just have not gotten around to looking into genetic testing, but then I'm much older and have no children.  I do have a young niece and wonder if I should be tested for her benefit....something I need to investigate more.
 
It's so wonderful that your tumor was caught at such a small size....I think that's the smallest one I've heard about. 
 
Thanks for keeping us updated!
 
 
God Bless.
 
 
sparrow
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ascott Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2008 at 8:44pm
Has anyone taken a look at this ASCO abstract? I found it interesting because it is an actual sampling of women who went to the hospital with stage 1 triple negative disease over 5 years. The DFS numbers are much much lower than the ones given to me by my oncologist.

http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=32171
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ascott Quote  Post ReplyReply Direct Link To This Post Posted: Jun 12 2008 at 8:55pm
I meant to say much higher. No one has died with 6 distant recurrences, 3 local. 25% did an ACT/TAC variety of chemo and 75% did either nothing or a different chemo regimen. My doctor has said that I have a 20-30% chance of recurrence and a 15% chance of death without chemo? How do they come up with their numbers and are they exaggerated?

40 years old TN/1.4cm/grade 3/no nodes/clear margins
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2008 at 5:33am
 "Conclusions: Overall and among adjuvant chemotherapy treated patients, TN patients had significantly worse outcomes compared to HR+/HER2- breast cancer patients. Treatment agents and modalities specifically designed for the triple-negative subgroup need to be identified and tested to equilibrate outcomes."
 
 
Ascott, I will read this again but didn't care for the conclusions?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2008 at 6:17am
Still, 88% surving disease free for 5 years is encouraging.
The stat I got from my Onc was about 80%+ , maybe becuase my tumour was 2.6cm?
46yrs: DX 12/07:Lumpectomy:Stage 2a:Grade 3: TNBC
Lymph nodes neg (SNB)
Clear CT and Bone Scan
Taxotere & Cyclophosphamide x 4,
25 Rads, Fin June 08
My Mom ER neg 1988, still here, no recurrence.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2008 at 6:51am
Katie you are so right.  There is good and bad in just about everything.
Thank you for pointing this out and someday we will read a study where it is all good  news.Thumbs%20Up-
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Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kymmie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2008 at 7:23am
Hi.
How is your chemo going?  I'm afraid I will be faced with the same question, chemo or not.  I am scheduled to have a lumpectomy on June 24th, my surgeon says I may or may not do chemo, but of course I will meet with the oncology team.  My tumor is less than 2cm, but I don't know if nodes are involved yet.
Pray, pray, pray!!!
Hugs to everyone!
IDC TN dx May 13, 2008
Had lumpectomy on 06/25/2008
0 Node involvement
Clear margins.
4 tx. of Cytoxin & Taxotere
6 weeks rads. Finished all tx on Christmas Eve, 2008.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote billie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 13 2008 at 8:09am
Hi Kymmie,This is Billie.
  If I would have had my way my sister would have been going to MD Anderson too.She had the month away appointment with them also.But the things that took place during that period of time before seeing the surgeon at md anderson changed her mind.Nothing to do with md anderson,just wrong inf. from a lake jackson radiation oncologist.A long story.She is doing a better job at not looking back at the decisions made than I am.
  Anyway Kimmie,If you do not mind,chould you please keep me posted as to what is going to take place with md anderson.Is it for sure that you are trip negative.Where were you first told that you are trip neg.My sisters diagnosis,I believe was pretty close to yours,and there was no node involvement, thank goodness,after her lumpectomy.Maybe md anderson is doing their own  second testing to determine if you are indeed trip neg.This is why that I am interested.From everything that I have read,there is no getting out of chemo if you are diagnosed with trip neg.
  This could be very interesting to find out.Like I have expressed so many times,if my sister had just made it to MD anderson, I would never have to be waisting my time or brain on second guessing her diagnosis or treatment.
  So Kymmie,You are in what I believe to be in excellent hands.You have a wonderful day and if I do not hear from you before June 24th,best of luck with your surgery and the lympth nosed being negative.Lots of Hugsssssssssss    Billie posting for my sister Betty
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ascott Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2008 at 5:36am
Hi Pam,

The conclusions tell us what we already know - that our hr+ sisters have a much better outcome with chemotherapy. What I find interesting is that the numbers for death and recurrence are much lower than the percentages our doctors give us. I was told that I had a 20 - 30% of recurrence and a 17% chance of death. I have never been able to find these terrible percentages in any population based studies.
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